Need Help/advice

[Heidi26]

Hi.

My name is Heidi, I am 26 years old and I am from Norway. I am reaching for help and advice.

First some background history:

 

I have type 1 diabetes and a skin condition called Necrobiosis Lipoidica - both are auto immun conditions. Last december I ate a lot of bread for lunch (for about a month and a half i think) and started noticing different things.. For the record - I have never eaten a lot of bread before, I usually have eaten crips bread, salad and such for lunch. My dinners have been "normal" with a lot of meat, fish, greens and vegetables, and not a lot of gluten have been consumed every day. 

 

At the end of december I started to notic that I have becom very tired and lacking energy, dark sircles under my eyes, my stomach was bloated and alternating between constipation and diarrhea, a lot of gas, I had a head ache evry single day accompanied by a stiff neck, and I noticed that I was feeling "sore" and "achy" in my arms/arm-muscle (it's hard to explaine). I also was swetting tremendously at night when I was sleeping. So I used google, and ended up at this forum - I started reading. Many was having the same issues that I was experiencing.

 

I had my yearly visit with my endo in January (because of my type 1 diabetes), and I took a bloodtest for celiac. It came back negativ. I went to the hospitable and took a biopsy of my intestines - it was also negativ. I also took bloodtest for metabolic diseases - all negative. I startet a gluten free diet all by my own, and I quickly became better, and all the issus went away. I have now been gluten free for about 7 months.

 

In january it's time for a new visit at my endo's office, and I have started eating gluten again (started saturday). The head ache is back, the gas in my stomach is back, my stiff neck and "sore" arms are back... Just waiting for the rest to come. So it is clearly that I am reacting to gluten.

 

My question for you is: Can it be that I have celiac, and that I had not been consuming enough gluten before the bloodtest and the biopsy in january? I probably had to slices of bread for my lunch for about to months. 

Would a normal diet where you only eat gluten in dinners, sauces, crackers and similar enough that celiac shows up on a bloodtest? Or do you have to eat the two slices of bread each day..? I know that the my type 1 diabetes gives me a higher risk at getting celiac. If I have celiac I want it confirmed, both for my own sake and because Norway have a financial aid where you get about 300 USD every month because gluten free food in so expencive in Norway. But you only get this aid when you have a celiac confirmed by biopsy.

 

I have read about non-celiac gluten intollerance/allergy - does anybody know if there is a correlation between type 1 diabetes and non-celiac aswell?

 

Thank you, and sorry for any typos - English is clearly not my native language :-)

[nvsmom]

Your English is very good.   Welcome to the board.

 

The diseases most commonly associated with celiac disease is diabetes (type 1) and Hashimoto's thyroiditis, so I think you were smart to get checked for celiac disease.

 

It is possible that your tests were falsely negative.  Celiac tests, blood tests and the endoscopy, all miss up to 20% of celiacs. They are not perfect tests.  It is always a good idea to have as many types of tests run as possible so the disease is more likely to be caught.  The full celiac blood panel is:

tTG IgA and tTG IgG (tissue transglutaminase)

DGP IgA and DGP IgG (deaminated gliadin peptides)

EMA IgA (anti-endomysial)

total serum IgA - a control test

AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests.

 

These tests are supposed to be the most accurate if you have been eating 1-2 slces of bread per day (or the equivalent) in the 2-3 months prior to testing.  The endoscopic biopsy only require 2-4 weeks of eating gluten.

 

This report discusses how good the tests are from pages 10-12: Open Original Shared Link

 

Do you know what tests you had done?

 

I do not believe there is a correlation between non-celiac gluten sensitivity (NCGS) and diabetes, but I could be wrong.  Celiac disease is an autoimmune disease but NCGS is not, although it is an immune response to a food the body is sensitive too.  I think NCGS can make the symptoms of other illnesses worse because of the inflammation it causes, and it also makes almost the same symptoms as celiac disease.  Those with NCGS must avoid gluten just as carefully as a celiac.

 

Best wishes.